Saturday, August 22, 2009

Another Review of Sorts: This Lovely Life by Vicki Forman

"Grief sucks, don't it?"

This is the reaction I got from a friend to a recent GEMM entry. And she nailed it on the head. As a mom of some special kids of her own, she gets it way better than I do. It was a revelation to me when she said it.... AH YES this is Grief! DUH!! Why didn't I see it before?? This angry, sad, frustrated, lonely, searching, seeking, grasping, fighting, treading water, pushing against gravity feeling... this is Grief.

And so, in honor of grief, I wanted to spend a little time "reviewing" a wonderful book about confronting parenting grief at its very core. Allow me to state that I am not a book reviewer. I just have an opinion, actually lots of them, and I thought I would share this one (I will do my best to refrain from sharing specifics from the book... everyone hates a spoiler!).

The best part of Vicki Forman's memoir is its honest brutality. The experience of parenting a micropremie is... unfortunately... not a singular experience. And Ms Forman's book could have focused on her heroics... the sacrifices, the successes, the 'triumph of the will' stuff. But instead, she paints a brutally honest portrait of herself, her experience, her son, and the medical establishment as a whole. She doesn't pull any punches, but... as a part of that "medical establishment" I don't feel personally hit. Many, many, many of the ethical and moral issues she presents in this memoir are not new concepts for me... I grapple with these issues every time a baby like this is born...

... how much is too much? when do you stop? what are the consequences of stopping, or not stopping care? what are we doing to families, and these children? why is that we (the medical community) can impose care on these patients, but when it comes time to remove care we require that parents be the ones to decide (nice position to put them in, ehe???)

The list goes on and on.

She is angry. Angry that she is put in this position, angry at the doctors, nurses, with choices that she can and cannot make. Angry at the situation, at the course her life has taken. And with a loss of perceived control that she feels she had (we all have this idea of perceived control... it really bites when you realize there is no such thing). With that anger comes overwhelming sadness, soul-numbing guilt, frustration, denial, vacillations between hope and fear, and emotional highs and lows that wear down any soul.


She builds up and tears down her own arguments, her straw men.... and I found myself simultaneously agreeing and disagreeing with her. She presents her experience as a special needs parent... warts and all... and does not allow the reader (or me) to raise her up on high. There are failures, and successes, and everything in between. She is a real person with real feelings, real reactions... and they are not always nice and not always friendly and not always 'good'. But they are REAL.

And that might be what I loved MOST about this book. I don't need any saintly martyrs to tell me how to be a special needs parent. I don't need anyone saying "count your blessings" and "he has a special purpose in God's plan'". Nice thought, but thoroughly unhelpful. And frankly, I really don't think that... if God exists ... he is a micro manager. I love my son more than anything... probably more than myself, to be honest.... but I hate his disability. I hate the being scared all the time: of today or uncertainty of tomorrow. I hate the fact that I... as his mommy.. may never get to experience "normal" parenting (if that even exists... apparently it does at ECFE). My worries will always be different, and our fights for the J-man will always be MORE.

And that straight up pisses me off.... and that's okay. It is okay to be this human that I am.

This Lovely Life is truly lovely. Not in a traditional way, or easy way, or a safe way. But in a very, very human way.


Wednesday, August 19, 2009


So, it all started with a friend getting a new job...

She leaves her job. Her job is now open. And I could get her job. A job I would probably love to have, and one in which I believe I would be well qualified for. Hmmmmmm....

And so the conversations begin. My hubby is all for the new job, if it was offered to me... "great opportunity" and all. But here is the significant rub....

It is a position during the day, and we do not have daycare for the J-man.

Now, I have loved this... the no-daycare thing. I liked the idea that WE are raising Jonathan... as flawed and freaky as we are... and that we didn't have to send him to daycare. I have nothing against daycare, actually... and at this point I am really starting to believe that it might do him a world of good....

But lets face it:

I have control issues.

And releasing my language-challenged, cute as a button, 'special needs' boy to the care of strangers??? Please. I go to every speech and OT session. EVERY ONE. Me, in the room. I am sure the therapists roll their eyes when I leave. So I have some serious control issues.

However, we are coming to a crossroads with Jonathan. I see the gains he has made this summer... and they ARE kick butt.... but we can do better. And I am starting to seriously feel like peer relationships and social situations might be enormously helpful. Plus there is the other issue: my own growth and development. Three days before my due date with the J-man I was offered a kick-butt job within the hospital. More money, status, clout (well, a little more of each). And I turned it down because in the end it was more important for me to be with my little man. I wanted to be his mommy first. I still do. But I am starting to think that he doesn't need me quite the same way. That I could let go a little and see if he might spread his wings.

Ahhh... back to control issues....

So, I have no faith that any daycare nearby can meet his needs. Except one: St David's Child Development Center. This one has seriously good potential. St. David's offers a integrated daycare/preschool program which provides services to both typically developing and special needs children. They have a Special Needs Coordinator who specifically works with the teachers to incorporate the IEPs or IFSPs into the classroom. We toured the facility and it was beautiful. GREAT gym, wonderful playground, and in the classrooms there were lovely children. Children with hearing aids, children with down syndrome, "typical" children, happy children everywhere. Plus, the school provides private speech and OT on site. The problem? It is 40 minutes away... the wrong direction. So, do I take a new... full time job... and have a nearly hour and a half commute so Jonathan can go to this school? Is that good for him? For us?

Friday, August 14, 2009

With the Signs come..

.... more vocalizations. A LOT more vocalizations.

Suddenly Jonathan gets that sounds/vocalizations and signs "get me things".

Signing '' while standing at the door: Let's go outside.

Signing 'more.. please' while saying "Bub" with mom holding bubbles: Blow more bubbles woman!

Signing 'help' while saying "Huu" : Help me already.
Signing 'help' while saying "Up mam" : Get out of bed and lets go downstairs.

For those on Sign Watch, our new signs include:
Milk (used for juice too)
All done
Choo-choo Train

For those on Word Watch, here are a few new words/vocalizations:

Ish (Fish)
Huu (Help)
Mam (Mom)
Star (really, star?!?!)
Bubb (Bubbles)
Bo (Boat)

So much progress in so little time!! It is fabulous! Of course, we still have a long way to go but it is so encouraging to see that something is changing for the better for once!!!

Alas, with the signs come..... temper tantrums. The J-man has always been good at them... he has a flare for the dramatic. But their frequency has increased. I am chalking it up to his newly discovered language skills. He has enough 'language' to understand the concept "language gets me things".... but not enough to have all the tools to get his point across. PLUS, he is now starting to realize that even though his words have power.... mommy can still say 'no'.

And that just pisses him off.

I just love it.


Saturday, August 8, 2009

As GEMM lurks...

If you understand why this photo
scares me, then you "get it".

The Green-Eyed Monster Momma is always lurking in the shadows. Sometimes her voice is a mere whisper in the void. An edge of sadness, loneliness or guilt that taints me. On good days, in good times, when Jonathan is doing well and we are seeing progress, she is faint and weakened. But she is always there, ready to rear her head and pull me down into the depths.

This weekend, she really got her hooks into me.

J-man and I went up to my parent's cabin this weekend. It is lovely... cool and green and relaxing. Jonathan loves to run in the yard, around the cabin and in the woods. But he most especially loves the water... to go on the dock and on the pontoon boat, look into the water and feel the waves. He is no happier when we are at the beach; at the water's edge, splashing and playing with the plastic boats. It is a great way to spend a summer weekend.

The cabin is located near some family friends' cabins, which makes for a lot of get-togethers and BBQs. The families work on projects together, go out boating together. I wouldn't be surprised if my parents retire near these friends and grow old together. These are lifelong friends of my parents. I grew up with their kids and they all have children of their own. Three generations of friends that are practically family.

Generally they are aware of Jonathan's issues. Of course, they do not know the depth and breadth of his delays, but I have explained briefly what is going on with him. Basically, I get pretty much the same response I get from everyone who isn't around Jonathan that much.... apparently, I am over-reacting and he will grow out of it. After this weekend they may refine their opinion... but then again, denial is a river that runs very deep.

Last night we were invited to a BBQ at their place. Jonathan was being a pill. His ability to tolerate the word "no" is very small and limited, and his temper tantrums are a work of art. I also think he was overtired and overstimulated by all the people and activity. He wanted to go to the water, to the boats, and get away from everyone. So, he and I sat on the pontoon boat at the end of the dock and watched the shore from afar. Adults chatted, children ran and played, a bonfire burned bright. And I sat alone on the boat with my son and felt so isolated and alone.

As it got darker and closer to dinner, I decided to bring Jonathan up to the house and endure the tantrum. Jonathan has a bit of the drama-king in him. He can throw himself down on the floor with the best of them. I have found that the best response in no response. Sit him down and let him rage... ignore and it will abate over time. Alas, the old ladies in the room (of which there were four) felt a need to try and 'fix' the situation. Advice whirled past me. Firmly, I said no... let him be... and thankfully my mom backed me up! So there I sat exhausted, my non-verbal tantruming two and a half year old son on the floor next to me.

I am used to being around other children of the same age as Jonathan who are developing typically. It is to be expected, and although it often brings GEMM out of the shadows, it doesn't generally fire her up. Rather, it comes into focus how behind Jonathan is, and a certain amount of despair fills my heart. But I have gotten better at pushing that aside and going on with the hope that someday those differences won't be as stark.

This evening was no different. Two other toddlers roamed around the cabin, one six months younger than Jonathan and one six months older. Both perfectly verbal and playing appropriately. They offered him toys and snacks (at their grandmas' urging), all of which we rejected with a whine and a flop by Jonathan.

One of these grandmas... a family friend of old who is not really known for her sensitivity and tack... was able to rouse GEMM to a full fury. As Jonathan lay on the floor, unengaged and acting so terribly 'autistic-like', this grandma called to her granddaughter and said "Hey Susie*, tell Pia 'I love you'."

And she piped up in this sweet little voice, "I luv you".

This 'old friend' laughed and said "Isn't that the sweetest thing you have every heard?".

And I think every organ in my body stopped.

It wasn't that Susie said it. She is very verbal. It is that her grandma... this 'friend'... prompted her to do it. To me. When my own son might not ever be able to say it, who was currently laying at my feet and moaning. It felt like a slap. It felt a deliberate 'na-na-ne-na-na'. Even GEMM was stunned. My escape couldn't be fast enough. I regrouped enough to make our excuses and bale. And as soon as I hit our car GEMM came out, crashing through my body and soul. There are no words to explain.

Later my mother said that she was sorry... that this 'friend' is flighty and non-sensibly and doesn't think. All true. But cruelty is still cruelty, even if unintentional. I have a 1000 things I wish I would have said... have done... to respond. I wish I had let GEMM out to do some damage... to inflict a little of the pain I felt. I didn't and I won't. Instead it will nest in me... and I fear what might grow.


*Susie is the name I have chosen for all cute kids who are supposedly better than the J-Man. If your name is actually Susie, please do not be offended.


View My Stats